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In this paper, a phenomenological hermeneutical method for interpreting narrative texts is proposed. Interviewees are asked to tell from their lived experience of participating in life world phenomena. The interview texts are written down and analysed, inspired by the theory of interpretation of Paul Ricoeur, in three steps: a first, naïve reading, structural analysis and comprehensive understanding. The method was presented the first time in 2004. In this paper, the theory behind it is elaborated. Basic concepts like phenomenon, meaning, life world, lived experience and concrete reflection are clarified, and the historical background of the method and its ontology, epistemology and methodology are explained.
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Narración , Proyectos de Investigación , Hermenéutica , HumanosRESUMEN
BACKGROUND: When older multimorbid people are acutely hospitalized, continuity of care is a fundamental goal in the healthcare process. However, some acute hospitalized older multimorbid patients do not experience continuity of care. This phenomenon is explored using the theoretical framework of Jürgen Habermas "Theory of communicative action". METHODS: Acutely hospitalized patients over the age of 65 with two or more chronic conditions and who received home care services were invited to participate in two interviews: one at the emergency department and the other 4-12 weeks after discharge. These interviews formed the basis for an evaluation of patient experience of continuity of care, and the content of the interviews was analyzed using a structured matrix. RESULTS: Fifteen patients participated with seven patients evaluated to have continuity of care in their healthcare process. Eight patients were evaluated as not having experienced continuity of care in their healthcare process. The categories from the matrix highlighted a healthcare system that interfered with a patient's lifeworld with a lack of communication, different expectations, frustration regarding care, strained relations to health care providers and feelings of being objectified. CONCLUSIONS: We conclude that mutual understanding based on communicative action is essential when it comes to patients' experiences of continuity of care. Our results justify improving the mutual understanding between patients and professionals in transition between healthcare sectors. Future research should target whether an enhanced focus on communicative action and mutual understanding in particular between non-healthcare professionals and patients will improve the patients' perception of continuity of care.
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Comunicación , Personal de Salud , Emociones , Humanos , Alta del Paciente , Satisfacción del Paciente , Investigación CualitativaRESUMEN
BACKGROUND: There is emerging interest in person-centred care within a short-lived yet complex medical imaging encounter. This study explored this event from the viewpoint of patients referred for an imaging examination, with a focus on the person and their person-al space. METHODS: We used convenience sampling to conduct semi-structured interviews with 21 patients in a private medical imaging practice in Australia. The first phase of data analysis was conducted deductively, using the six elements of the person-centred, patient-journey framework of the Australian Commission on Safety and Quality in Healthcare: transition in; engagement; decisions; well-being; experience; and transition out. This was followed by inductive content analysis to identify overarching themes that span a patient's journey into, through and out of an imaging encounter. RESULTS: The transition-in phase began with an appointment and the first point of contact with the imaging department at reception. Engagement focused on patient-radiographer interactions and explanations to the patient on what was going to happen. Decisions related primarily to radiographers' decisions on how to conduct a particular examination and how to get patient cooperation. Participants' well-being related to their appreciation of gentle treatment; they also referred to past negative experiences that had made a lasting impression. Transitioning out of the imaging encounter included the sending of the results to the referring medical practitioner. Person-al vulnerabilities emerged as a cross-cutting theme. Patients' vulnerability, for which they needed reassurance, pertained to uncertainties about the investigation and the possible results. Healthcare professionals were vulnerable because of patient expectations of a certain demeanour and of pressure to perform optimal quality investigations. Lastly, patients' personal lives, concerns and pressures - their person-al 'baggage' - shaped their experience of the imaging encounter. CONCLUSION: To add value to the quality of the service they deliver, radiography practitioners should endeavour to create a person-al space for clients. Creating these spaces is complex as patients are not in a position to judge the procedures required by technical imaging protocols and the quality control of equipment. A reflective tool is proposed for radiographers to use in discussions with their team and its leaders on improving person-centred care and the quality of services in their practice.
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Técnicos Medios en Salud , Personal de Salud , Australia , Humanos , Investigación Cualitativa , RadiografíaRESUMEN
BACKGROUND: People with dementia describe experiences of loss that threaten their autonomy and ability to contribute to society. They often have difficulties with orientation, loss of roll function, and fear about the future, and need help from others. An increasing body of literature also focuses on how people with dementia search for meaning and maintaining of quality to life, and how they find strategies to live with dementia. A review of the scientific literature on coping and dementia is warranted and can help to advice and inform healthcare personnel and decision makers on how they can support and plan for appropriate healthcare services for people with dementia. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge regarding people with dementia's experience of coping. METHODS: We conducted a systematic, computerised search of Medline, Embase, Cinahl Complete, PsycINFO and Age Line combining MeSH terms and text words for different types of dementia with different descriptions of experience. Studies comprised 1) a sample of people with dementia, 2) a qualitative interview as a research method and 3) a description of experiences of coping were included. The search resulted in 7129 articles, of which 163 were read in full text, 80 were excluded due to the exclusion criteria or low quality according. The analysis was conducted in line with qualitative content analyses. RESULTS: This interpretative qualitative meta-synthesis included 74 articles of good quality encompassing interviews with 955 persons with dementia. The material revealed two main resources of coping: (1) Humour and (2) Practical and emotional support, and four overall strategies in which people with dementia cope with the challenges they experience: (1) Keep going and holding on to life as usual; (2) Adapting and adjusting to the demands from the situation; (3) Accepting the situation; and (4) Avoiding the situation A comprehensive understanding of the categories led to the latent theme: Balancing the struggle of living with dementia. CONCLUSION: This meta-synthesis indicates that people with dementia cope in different ways and using several parallel strategies. This insight is essential in dementia care to facilitate a supportive environment.
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Adaptación Psicológica , Envejecimiento/psicología , Demencia/psicología , Calidad de Vida , Anciano , Actitud Frente a la Salud , HumanosRESUMEN
Lifeworld-led care provides a route through which research and practice can navigate the 'biopsychosocial' allowing us to overcome the shortfalls of the medical model and enabling us to prioritise humanity in the care of people living with tinnitus. In this article, we sought to explore qualitative descriptions of life with tinnitus. We aimed to address the question 'what it is like to live with tinnitus?' In doing so we examined qualitative studies and provide suggestions about key themes that seem consistent. This is a narrative, thematic overview of the way lifeworld has been conceptualised and explored in tinnitus research.
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Modelos Teóricos , Acúfeno/psicología , Adaptación Psicológica , Femenino , Humanos , Masculino , Investigación CualitativaRESUMEN
BACKGROUND: Identifying how persons with dementia experience lived space is important for enabling supportive living environments and creating communities that compensate for the fading capabilities of these persons. Several single studies have explored this topic; however, few studies have attempted to explicitly review and synthesize this research literature. The aim of this systematic meta-synthesis was therefore to interpret and synthesize knowledge regarding persons with dementia's experience of space. METHODS: A systematic, computerized search of AgeLine, CINAHL Complete, Embase, Medline and PsycINFO was conducted using a search strategy that combined MeSH terms and text words for different types of dementia with different descriptions of experience. Studies with 1) a sample of persons with dementia, 2) qualitative interviews as a research method and 3) a description of experiences of lived space were included. The search resulted in 1386 articles, of which 136 were identified as eligible and were read and assessed using the CASP criteria. The analysis was inspired by qualitative content analyses. RESULTS: This interpretative qualitative meta-synthesis included 45 articles encompassing interviews with 672 persons with dementia. The analysis showed that living in one's own home and living in long-term care established different settings and posed diverse challenges for the experience of lived space in persons with dementia. The material revealed four main categories that described the experience of lived space: (1) belonging; (2) meaningfulness; (3) safety and security; and (4) autonomy. It showed how persons with dementia experienced a reduction in their lived space due to the progression of dementia. A comprehensive understanding of the categories led to the latent theme: "Living with dementia is like living in a space where the walls keep closing in". CONCLUSION: This meta-synthesis reveals a process whereby lived space gradually becomes smaller for persons with dementia. This underscores the importance of being aware of the experiences of persons with dementia and the spatial dimensions of their life-world. To sustain person-centred care and support the preservation of continuity and identity, one must acknowledge not only the physical and social environment but also space as an existential experience for persons with dementia.
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Demencia/psicología , Ambiente de Instituciones de Salud , Servicios de Atención de Salud a Domicilio , Acontecimientos que Cambian la Vida , Instituciones Residenciales , Demencia/terapia , Ambiente de Instituciones de Salud/tendencias , Servicios de Atención de Salud a Domicilio/tendencias , Humanos , Cuidados a Largo Plazo/psicología , Cuidados a Largo Plazo/tendencias , Instituciones Residenciales/tendenciasRESUMEN
Studies on aging with schizophrenia have focused mainly on the adversities of aging with mental illness. The present study, however, examined the subjective experience of well-being among individuals with schizophrenia. Taking a phenomenological reflective life-world approach, in-depth, semistructured interviews with 18 aging individuals with schizophrenia were thematically analyzed. Four main themes emerged: (a) "I love the pills . . . they are very helpful": A balanced course of the illness as a basis for well-being in old age; (b) "I'm going to have my own exhibition at the museum": Self-fulfillment as promoting well-being; (c) "It's just like a family here": Experiencing a sense of belonging; and (d) "I live like everyone else": Aging as an opportunity for normalization. Alongside hardship, the participants perceived old age as a "window of opportunity," enabling the fulfillment of lifelong desires for a social life, acceptance, and a satisfying occupation. Implications regarding interventions with this unique population are discussed.
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Envejecimiento/psicología , Aceptación de la Atención de Salud/psicología , Esquizofrenia/terapia , Psicología del Esquizofrénico , Anciano , Anciano de 80 o más Años , Femenino , Estado de Salud , Humanos , Entrevistas como Asunto , Israel , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Calidad de Vida , Apoyo SocialRESUMEN
There is limited consensus about what constitutes humanly sensitive care, or how it can be sustained in care settings. A new humanised care assessment tool may point to caring practices that are up to the task of meeting persons as humans within busy healthcare environments. This paper describes qualitative development of a tool that is conceptually sensitive to human dimensions of care informed by a life-world philosophical orientation. Items were generated to reflect eight theoretical dimensions that constitute what makes care feel humanly focused. An action research group process in 2014-2015 with researchers, service users, healthcare professionals in two diverse clinical settings (stroke rehabilitation and dermatology) was used. Feedback on conceptual content, transparency of meaning and readability was then gained from a panel in Sweden and third-year student nurses in the UK. The tool can be applied to attune staff to human dimensions of care, offering items which point to concrete examples of humanising and dehumanising features of practice in ways that have not yet been fully captured in the caring literature. Based on theoretically led experiential items, with dedicated focus on what makes people feel more, or less than human, it may offer improvement on available assessments of care.
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Atención a la Salud/normas , Empatía , Evaluación en Enfermería/métodos , Atención a la Salud/tendencias , Humanos , Evaluación en Enfermería/normas , Atención Dirigida al Paciente/métodos , Estudiantes de Enfermería/psicología , Encuestas y Cuestionarios , SueciaRESUMEN
AIMS AND OBJECTIVES: The aim of the study was to illuminate the meanings of trigger situations experienced in everyday life when learning to live with diabetes. BACKGROUND: Adults become active learners when faced with situations they do not know how to manage, triggering a need to understand something in a different way than before. Knowing more about experiential learning for persons living with diabetes is important for understanding how learning can be supported by health care. DESIGN: A life-world approach with a phenomenological hermeneutical method, inspired by the philosophy of Paul Ricoeur. METHODS: This method was used for interpreting transcriptions of interviews and consists of three stages: naïve understanding, structural analysis and a comprehensive understanding. Participants (n = 13), with either type I or type II diabetes, were interviewed on three different occasions over a three-year period after being diagnosed with diabetes. RESULTS: When learning to live with diabetes, the meanings of trigger situations were described as 'the unpredictable body heightens insecurity with awareness of one's own dependability', 'losing control in unsustainable situations' and 'encumbered by vulnerability and temporality in earlier familiar situations'. CONCLUSION: The meanings of trigger situations were to lose the smooth, unreflected way of managing an everyday life situation, interlaced with feelings of lost control of how to live with new insights of being vulnerable. Trigger situations meant an opportunity for learning, as well as being demanding, unplanned and with limited freedom of choice. Trigger situations presented life and body as unpredictable. RELEVANCE TO CLINICAL PRACTICE: If healthcare professionals can identify the worries and questions raised in trigger situations, knowledge gaps can be identified and reflected on to stimulate learning.
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Adaptación Psicológica , Diabetes Mellitus Tipo 2/psicología , Educación del Paciente como Asunto , Adulto , Anciano , Diabetes Mellitus Tipo 2/enfermería , Femenino , Humanos , Masculino , Persona de Mediana Edad , Solución de Problemas , SueciaRESUMEN
The aim of the study was to report the lived experience of the wound care nurse (WCN) in caring for patients with pressure ulcers (PU). WCN play an important role in caring for patients with PU, but the effect on caring for individuals with such wounds is poorly understood. A descriptive and interpretative study on the life worlds of spatiality, temporality, relationality and corporeality was carried out. Utilising the hermeneutic Heideggerian phenomenology, data were collected over a 3-month period in 2012 using in-depth interviews with five WCN. The interviews revealed eight themes: 'challenge', 'making sense of it all', 'coping and self-care', 'advocate of mine/making a difference', 'knowledge and technology', 'we have seen what can happen', 'holistic caring' and 'frustration'. Twenty-five sub-themes were also identified. WCN experienced a demanding and rewarding role of caring, influenced by the environment and the challenges with individuals living with PU. This study demonstrated an enriching yet challenging role. Recommendations for WCN, health care authorities and education providers include raising awareness of the importance of self-care, greater recognition of the effect of this role on patients with PU and changing education to include reflective practice and resilience strategies.
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Adaptación Psicológica , Enfermeras y Enfermeros/psicología , Pautas de la Práctica en Enfermería , Úlcera por Presión/enfermería , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
AIM: To explore patients' most distressing concerns during a hospital stay. BACKGROUND: The characteristics of hospitalised patients have changed. Care is provided at a higher age, lengths of stay have fallen and the nursing workload is increasing. It is presumed that hospitalised patients are more seriously ill and have more palliative needs than previously. Studies show that inpatients suffer from more distress than similar outpatients although there is a lack of overall knowledge about inpatients' distress and major concerns, regardless of age, diagnosis or care setting. METHODS: This study was part of a point prevalence survey (PPS) concerning symptom prevalence. Of the 710 patients who participated in the PPS, 678 (95%) answered an open-ended question in a questionnaire: What is your main concern or what is most distressing or troublesome for you at present? Using a life-world approach, the text was analysed qualitatively and patients' concerns were interpreted in two main dimensions, an intersubjective dimension and a temporal dimension. FINDINGS: The patients reported extensive suffering due to illness, symptoms and failing health. Patients were concerned about family members, existential issues and the future. Three aspects of the patients' most distressing concerns were interpreted: The suffering self, The suffering person in close relations and The suffering person in a threatening world. CONCLUSION: Hospitalised patients are affected by severe illness, distressing symptoms and existential quandaries, revealing extensive human suffering in the midst of the demanding activities that take place during an ordinary day in a hospital. To support patients and alleviate suffering, hospital staff need to be more sensitive to patients' most distressing concerns. This presupposes a hospital environment in which the value system supports caring and comforting behaviour.
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Pacientes Internos/psicología , Estrés Psicológico/etiología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Familia/psicología , Femenino , Hospitalización/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Modelos Psicológicos , Prevalencia , Estrés Psicológico/epidemiología , Suecia/epidemiología , Adulto JovenRESUMEN
BACKGROUND: Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment. METHODS: This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach. RESULTS: THIS STUDY HAS IDENTIFIED DIFFERENT SPHERES IN WHICH PEOPLE DIAGNOSED WITH ADVANCED GASTROINTESTINAL CANCER VACILLATE BETWEEN EXISTENTIAL UNCERTAINTY AND CERTAINTY: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people's lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves -a new experience that lays the foundation for development of knowledge, personal learning and growth. CONCLUSIONS: People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.
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As Taiwan enters the post-modern era of professional medical care, a host of issues relating to nursing care are becoming increasingly pressing. On the one hand, the wide range of ailments of body and mind requiring treatment is placing a major financial burden on the national health care system. On the other hand, few hospitals are able to provide "comprehensive care of body and mind." In addition to primary prevention, the most effective way to reduce the overall cost of medical care is to effectively bring volunteer caregivers (those who have an "ethical connection" with the patient, i.e., family, friends, neighbors, volunteers, etc.) into all levels of the caregiving process. Moreover, as medical ethics becomes increasingly focused on the well-being of the patient, more attention is being given to the healing relationship itself. Due to its ability to swiftly relieve a wide variety of ailments, the Western medical model has become widely accepted in Asia. Yet, a patient may feel a greater sense of healing when treatment is based on the principles of ethical caregiving. For example, in the way it quickly relieves the prevailing symptoms, psychiatric medication is like a freeway. By contrast, volunteer caregiving is more like a local road, which may be slower, but eventually takes one all the way home. Thus, making nursing care more person-centered and indigenized gives the patient a sense of not only being cured, but also being "cared for." However, for a long time the theory and practice of nursing education in Taiwan has been based on the Western model of nursing. In this model nursing is treated as a branch of the biological sciences, an overall approach quite different from the traditional view of caregiving in Asian societies. Nonetheless, recent research and clinical practice indicates that an indigenized form of nursing care may be a more suitable approach to comprehensive care, and that such an approach has much potential for widespread application in Taiwan and other Chinese societies.
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Ética en Enfermería , Humanidades , HumanosRESUMEN
BACKGROUND: Metastatic cancer is often experienced by patients as a death sentence. At the same time, translational scientists approach metastasis also as an interesting phenomenon that they try to understand and prevent. These two sides of the same coin do not mask the considerable gap that exists between the laboratory world of scientists and the life world of patients. Funding agencies nowadays increasingly demand researchers to be responsive to the values and priorities of patients and public. One approach to bridge this gap and to increase the impact of science is patient and public involvement (PPI). A concise literature review of PPI research and practice in this paper revealed that although PPI is often deployed in translational health care research, its methodology is not settled, it is not sufficiently emancipatory, and its implementation in basic and translational science is lagging behind. Here, we illustrate the practical implementation of PPI in basic and translational science, namely in the context of HOUDINI, a multidisciplinary network with the ultimate goal to improve the management of metastatic disease. METHODS: This paper reports on a societal workshop that was organized to launch the holistic PPI approach of HOUDINI. During this workshop, societal partners, patients, and physicians discussed societal issues regarding cancer metastasis, and contributed to prioritization of research objectives for HOUDINI. In a later stage, the workshop results were discussed with scientists from the network to critically review its research strategy and objectives. RESULTS: Workshop participants chose the development of metastasis prediction tools, effective therapies which preserve good quality of life, and non-invasive tissue sampling methods as most important research objectives for HOUDINI. Importantly, during the discussions, mutual understanding about issues like economic feasibility of novel therapies, patient anxiety for metastases, and clear communication between stakeholders was further increased. CONCLUSIONS: In conclusion, the PPI workshop delivered valuable early-stage input and connections for HOUDINI, and may serve as example for similar basic and translational research projects.
Metastatic cancer is an aggravated form of cancer, that patients are afraid of. At the same time, cancer researchers are fascinated by this disease. Therefore, there is an apparent gap between how patients and researchers feel about cancer. If researchers wish to be most helpful to cancer patients, it is important to consult the patients and ask what they need and find important. This is also stimulated by agencies that financially support research projects. A possible way to do this is Patient and Public Involvement (PPI), in which not only scientists, but also patients and lay people are asked to provide input. It appears, however, that PPI is scarcely applied in basic science. In this article, we describe how a collaborative network of basic and translational cancer researchers, HOUDINI, intends to include the patients' voice throughout the research progress and actively asked for input from patients, societal partners and physicians at the start of their project. These people discussed what themes they found most important to be researched by HOUDINI. Later, the HOUDINI researchers reflected on this. This example shows how PPI can be applied and how HOUDINI received valuable input for their research goals.
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BACKGROUND: Patients with type 2 diabetes usually start treatment with oral hypoglycaemic medications once they have been diagnosed. They eventually require insulin injections. We looked into the experiences of such patients with allopathic treatment alternatives over the course of their journey. METHODS: The study was conducted using a qualitative inquiry (phenomenological approach triangulated with modified grounded theory) from July 2019 to January 2020. A total of 24 participants (11 men and 13 women) were recruited purposively and interviewed face-to-face until theoretical saturation was reached. QDA Miner Lite v2.0.9 was used to categorise the data. RESULTS: The majority of patients had no previous notions regarding their illness. They did not have an emotional reaction to being diagnosed. They were uncomfortable on oral hypoglycaemic agents because of uncontrolled blood glucose and gastrointestinal disturbances, which were thought to be the main causes for medication changes. Initial insulin treatment experiences included fear of injection pain, difficulty self-injecting, and a sense of last resort. Insulin's effectiveness, ease of injection with a little needle, and lack of gastrointestinal discomfort were all key reasons in changing the patients' minds about it. Patients have rigorously adhered to insulin since it was found to improve health and bring life. CONCLUSION: The "life-world" journey of patients with type 2 diabetes with allopathic treatment options was started to be informed of the "unknown" (diabetes), which leads to the "ugly life" (with oral agents), and bridge to and living with the "terrible" (insulin), which was later found to be effective and perceived as "life."KEY MESSAGESPatients with type 2 diabetes believed that life with oral hypoglycaemic medications was "boring."The major reasons for switching to insulin were "uncontrolled blood sugar levels" and "gastrointestinal disturbances" brought on by oral medications.Insulin first terrified type 2 diabetes patients, but they eventually referred to it as "life."
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Diabetes Mellitus Tipo 2 , Glucemia , Diabetes Mellitus Tipo 2/tratamiento farmacológico , Femenino , Humanos , Hipoglucemiantes , Insulina/uso terapéutico , MasculinoRESUMEN
This article analyzes the problem of internal personality conflicts from the the standpoint of existential-phenomenological ontology. The article presents a theoretical substantiation of phenomenological ontology as a nonclassical paradigm in the human sciences to solve existential conflicts in personality. It is noted that the main models of internal conflict do not give a satisfactory answer to the question of psychogenesis and psychological mechanisms for resolving existential conflicts. It is emphasized that it is perspective to analyze internal conflicts, relying upon phenomenological ontology and the existential approach. The main provisions of phenomenological ontology presented in the works of Husserl and Heidegger, as the founders of this scientific direction, are considered in a psychological context. A classification of existential experiences of a difficult life world is proposed, depending on the intra- and inter-orientation of mental processes. The concepts of the self-closing life world, ambivalent Other, ambivalent intentionality, spontaneous involvement are introduced, making it possible to substantiate a conceptual model for resolving existential personality conflicts. It is concluded that the resolution of existential conflicts is associated with the feeling of an intersubjective life-world, in which the ambivalent Other and spontaneous bodily involvement play a primary role.
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Existencialismo , Personalidad , Humanos , CogniciónRESUMEN
PURPOSE: To explore the essential meaning of how sensory disturbances caused by Oxaliplatin influence self-understanding and freedom to live an everyday life among survivors after colorectal cancer. METHODS: Data was generated by means of a semi-structured individual interview with eight survivors after colorectal cancer who continued to experience chemotherapy-induced peripheral neuropathy at least one year after completing chemotherapy with Oxaliplatin. Data analysis was guided by existential phenomenology and descriptive life-world research. RESULTS: The essential meaning was structured by four constituents. 1) An unpleasant fluctuating sensation which is impossible to ignore, 2) Breaking through of noise and pain despite struggling to keep them at bay, 3) Continuously feeling ill despite being cured, and 4) Bodily constraints that impact self-understanding and limit enjoyment of life. CONCLUSION: The survivors used distraction to keep the sensory disturbances at bay but were forced to adapt to a new self-understanding as sufferers after chemotherapy despite being cured of their cancer disease. This way of being-in-the-world was understood by survivors, their families and healthcare professionals as a necessary price to pay to be alive. However, marked as sufferer after chemotherapy, the participants' everyday style of experience and life revealed as an ill health condition, which limited their ability to accomplish everyday activities as before and their freedom to realize their potential-the "I can".
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Antineoplásicos , Neoplasias Colorrectales , Enfermedades del Sistema Nervioso Periférico , Antineoplásicos/efectos adversos , Neoplasias Colorrectales/tratamiento farmacológico , Humanos , Enfermedades del Sistema Nervioso Periférico/inducido químicamente , Enfermedades del Sistema Nervioso Periférico/tratamiento farmacológico , Solución de Problemas , SobrevivientesRESUMEN
The quality of care crisis (QCC) is one of the most crucial crises the modern medicine is confronting, as the existential and psychological needs of patients have not been addressed and satisfied. Several attempts have been made to find solutions for QCC, e.g., the Marcum's recommendation to make physicians virtuous. Most of the existing formulations for the QCC have regarded technology as one of the causes of this crisis and not part of its solution. Although the authors agree with the role of technology in creating the crisis of care to some extent, in this article we try to present the crisis of care so that medical technology is an important part of its solution. For this purpose, we analyzed QCC from the philosophical perspectives of Husserl and Borgmann and put forward a novel proposal to take account of technology in QCC. In the first step, it is discussed that the role of technology in causing the crisis of care is due to the gap between the techno-scientific world and the life- world of the patients. This formulation shows that the crisis-causing role of technology is not inherent. In the second step, it is tried to find a way to integrate technology into the solution to the crisis. In the proposed reframing, designing and applying technologies based on focal things and practices make it possible to develop technologies that are caring and are able to mitigate QCC.
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OBJECTIVES: The purpose of this study was to describe the meanings of the life-world of school-age children with advanced cancer through aesthetic expression. DATA SOURCES: Drawing, writing, and interviewing data from 10 school-age children with advanced cancer living in Negros Island, Philippines, who met the inclusion criteria of the study. CONCLUSION: Five major thematic categories structured the participants' existential life-worlds with advanced cancer and were reflected within five lived-worlds as follows: lived body, poor body conditions but strong mind; lived relation, unlike the others; lived time, being in present while waiting for normal life; lived space, certain places of living and caring; and lived thing, supportive living by technology. The participants did not have control over the external events that happened to them, but their internal reactions made a powerful turning point. Advanced cancer made them tough and resilient to emotions. The negative problems dictated their response and allowed being unaffected by advanced cancer, and they were able to do it. IMPLICATIONS FOR NURSING PRACTICE: The results presented by this study can be used to enhance positive feelings and emotions of school-age children with advanced cancer. Schooling should remain an active part of participants' life to provide them with a sense of normalcy to carry on with their social and academic development. A prearranged discussion with the teacher, principal, school nurse, and hospital team is important to help everyone know what to expect.
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Neoplasias , Niño , Escolaridad , Estética , HumanosRESUMEN
Purpose: To deepen the understanding of how survivors' experience and give meaning to the embodied phenomenon of chronic sensory disturbances in everyday life after oxaliplatin treatment for colorectal cancer.Methods: Data was generated by means of a semi-structured interview guide and drawings with the aim to explore eight survivors' lifeworld experiences. Data was analyzed through a phenomenological approach.Results: The essential meaning of sensory disturbances emerged in two main themes and four sub-themes. Theme A: 'A peculiar experience that is difficult to logically understand' with the subthemes; 'An ambiguous perception in hands and feet' and 'Being alienated from one's own body'. Theme B: Losing touch with the world' with the subthemes: 'A lack of sensory contact with physical surfaces' and 'Breakdown of sensitivity in hands hampers fine motor skills and social contact'.Conclusion: Sensory disturbances contributed to an ambiguous and discordant perception of an alienated body that was difficult to describe and affected the ability to act and connect to things and other people. Metaphors and drawings were valuable as means to verbalize and illustrate the changed body perception where the 'I can' changed into 'I cannot'. To support the embodied connection to the world new usage patterns were required.